Ask HN: A friend has brain cancer: any bio hacks that worked?
379 comments
·January 9, 2025y33t
Don't bother, if you're in a position to do so, help them find a first-class brain surgeon. Get them into Sloan Kettering, Mayo, Duke or OHSU or whoever. Help them look for clinical trials to get chemo past the blood-brain barrier (I've heard some promising things in this area, though I'm not sure if it's being tested on humans yet). If they have a family that's taking care of them, offer to help them. Even just a grocery trip a week or something would be a massive help (obviously this depends on how close you are to them but you get the picture). Hell, offer to just hang out with your friend for a few hours so the family can get out and decompress for a bit if they need to.
Don't let them fall into the false hope of "I might have 5-10 more years". The person I knew fell into that and did absolutely nothing they wanted to do before they died because they were in denial and kept holding onto the expectation that they'd get better.
If they have money, every cockroach will come out of the woodwork trying to get a piece. Watch out for them if you can.
I know someone who got scammed out of a very substantial amount by a real brain surgeon in America(!!!), who referred them to a guy that sold a bogus device which he claimed would "destroy the tumor" (no FCC sticker on it and the entire thing was controlled by a Raspberry Pi when I disassembled it). Brain surgeon had a bunch of FDA complaints against them too and performed it in one of the poorest cities in the country, across the street from a burnt out apartment building. The local pharmacy had a constant police presence because of armed robberies for the drugs. These details scream sketch to normal people, but normal people aren't going to be dying of brain cancer in the foreseeable future. Desperate people will do crazy things if they think it offers some hope.
d--b
See the problem with this disease is that the general treatment is shit.
With two inoperable tumors the chances that chemo and radiation alone do anything more than giving him a week or two are zero.
So in that respect, going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online.
You're just recommending the "most-accepted" moonshot.
JumpCrisscross
> going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online
American "physicians received significantly less intensive care than the general population" at the end of their lives [1]. (Canadian physicians "used both intensive and palliative care more than nonphysicians" [2].)
The lesson seems to be yes, go ahead and pursue your moonshots, but don't let that cloud the reality of the situation and don't let the moonshots debilitate what little time you have left.
[1] https://jamanetwork.com/journals/jama/fullarticle/2482318
d--b
Agreed
grayhatter
I'm sorry about your friend! Really, it's friends, I think... It's not fair to them, but its exceptionally unfair to you too.
It'd admirable that you're trying to help, that's the kinda person that I want to be when I, eventually, grow up.
I do wanna suggest that in the middle of taking care of your friends, you don't forget to take care af yourself. I give this advice knowing I'd never follow it, so maybe I should say try to ignore yourself as little as possible.
The OP you replied to is right, and if you read it again, you'll notice his actual recommendation wasn't any kind of moonshot. If you still don't see it, remember that in addition to the person diagnosed with cancer, the stages of grief hit their friends and family too.
I'm sorry for how messed up the whole thing is dude, and hope you'll be ok.
RamblingCTO
Agreed. Maybe look into end of life LSD therapy (https://www.webmd.com/palliative-care/features/facing-death-...) and work on the bucket list. That should be priority #1. #2 can be to try a lot of "out there stuff", but don't forget to live.
lumost
End of life bucket lists are a strange thing, I recall a close family member who entered hospice. They kept attempting to use their credit card to pay for all expenses, dinners, etc.
Of course, everyone around wanted to contribute - this person was not well off, the credit card was not used for much.
It took some weeks later after they passed for me to realize that they knew it was a credit card bill they would never need to pay. In all likelihood others contributions simply blocked them from feeling that they were contributing.
hoppp
Lsd works in the sense that it makes you not care about dying that much, the ego death helps.
Combine that with ketamine for a nice anti depressant effect and you got a really good party going.
Why not do mdma also to kill the ptsd, maybe a visit a psytance festival instead of the hospital?
Jokes aside, its sad to prepare for death. I think drugs are not the answer, but they can help too. Depends on the people. Maybe hallucinogens trigger mental illness too. I dont recommend anyone to take drugs.
RamblingCTO
It's not "drugs", it's science and therapy. Huge difference. And yeah, fun fact: both ketamine and mdma are also used in therapies and are researched for decades now.
sfn42
Not like they have much to lose
ausbah
I know when someone’s faced with certain death they’ll do almost anything they can to survive if only for a little bit longer, but this thread full of personal antectodes and largely non-reproduced effects from random pubmed articles is the hackernews equivalent of essential oils or smth
nikisweeting
OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
JumpCrisscross
> OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
As long as OP and their friend know this is spinning wheels for fun and is pretty much certainly not going to extend their lifespan, sure. There can be satisfcation in knowing you never truly came--nor will ever come--to terms with death.
isleyaardvark
The post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving.
shakna
As someone who nearly died a little over two years ago from cancer... It's irresponsible.
Point to the experts, but don't cause further pain through at best, false hope, and at worst, a murderous experience for your last few days.
Lots of people want to help. That leads to questions like this. You're desperate to help someone who is suffering. But you will absolutely make that suffering worse if you act through ignorance.
nozzlegear
As someone with a mother, stepfather and multiple extended family members who've survived cancer thanks to modern medical science, all I can say is hopefully their friend at least asked before OP went out looking for these harebrained schemes.
kerkeslager
I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it.
Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
mllev
OP is asking for lesser-known possible treatments/trials/diets/whatever for a friend who is probably weeks to months from death. And your contribution is to stop people from helping them because of something about what now?
lambdaphagy
My impression formed from my time in cancer drug discovery is that bro science is, within practical bounds, a perfectly reasonable option for one arm of a comprehensive plan for treatment.
A lot of things that sound like bro science are actually broadly supported in the literature. But studying this stuff is hard because of all of the usual issues with human subjects, the less than complete reliability of our epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not?
If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.
_DeadFred_
Every single person I know who died from cancer young went down this route, from trying weird cures to going and seeing John of God in Brazil. Zero cured or delayed the cancer. All delayed acceptance and GREATLY regretted wasting that time and wishing they had had more time in the acceptance phase not the 'this can't be real' 'I can't die' 'There has to be something' denial.
This can and does hurt them, and is cruel. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.
lambdaphagy
My own view is not that self-experimentation is an appropriate, let alone likely efficacious, substitute for reconciliation to the idea of one's death. I certainly don't endorse interference in others' treatment, however well-intentioned. If you want to say: "you shouldn't treat your terminal illness like a science fair project unless you possess extreme sang froid and are precommitted to the acceptance of your death", I'd find that totally reasonable.
But my own view is rather that institutional epistemology is somewhat overrated, and self-experimentation somewhat underrated, relative to the conventional wisdom. (Though some people go too far in this direction.) This leads to general overconfidence in epistemic efficient market hypothesis arguments ("if a protocol were worthwhile, someone would have found it already") and underconfidence in the value of crowd-sourcing trying a bunch of stuff and writing it down. This view was principally informed by developing cancer drugs for a living and coming to appreciate that it's really hard, your knowledge of what's going on during a clinical trial is highly abstracted, and you can't be everywhere at once. It was secondarily informed by watching people do bro science on certain important questions and making interesting progress in large part because they could move much faster than academic or corporate research.
If we recast the point of contention as: "what is the largest effect size that could be found by an institution outside of academia or industry?", my position is that it's plausibly non-zero.
I'm sorry for your friends and I hope they found peace.
potsandpans
Your tone policing in this thread is offensive.
Apparently you know many people that have died from cancer young, and this qualifies you to know how a terminally ill person should process that emotion.
You have zero qualification. How dare you imply that you know best for someone going through this.
Hopefully no one reading this is ever in that situation. But I'll defer to the individual who's facing the death count down to process it in their own way.
lambdaphagy
To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication.
This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science.
Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
7e
The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise.
Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.
EVa5I7bHFq9mnYK
Is it juice specifically that should be avoided? What about grapefruit in solid form? Pomelo?
hsuduebc2
I love that someone asks for advice. Even for individual experience because he is miserable and some people are basically like "Nah just die. It would be uNeThIcaL."
potsandpans
It's incredible. People are completely out of touch.
totallynothoney
Time is precious.
_DeadFred_
↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance.
Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in.
https://www.who.int/news/item/07-02-2000-world-health-organi...
UniverseHacker
Personally, if I were dying and someone kept saying fake nonsense like "you are getting the best care" I'd probably cut off contact with them, or at least wish they would stop. I'd know I'm getting mediocre care like everyone else, that's also part of accepting the reality of the situation. I'd know my doctor probably graduated at the bottom of his/her class or else he/she wouldn't be an authorized provider on an HMO- and he/she probably can't understand or doesn't read the latest medical research on his/her own. And that probably doesn't matter one bit, because the "best care" wouldn't work either.
I might also want them to share technical ideas they think might help, or at least I would tell them if I wanted them to or not. If you decide to experiment on yourself, you can still accept the reality of a terminal illness. For me, that would be part of ending my life with dignity- knowing I sincerely tried to understand and solve the problem my own, and share what I learned with others, just like I did in the rest of my life.
Earw0rm
The best care is not necessarily the best bleeding-edge treatment.
Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.
The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.
And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.
graemep
Definitely true, and I know that its common for people who are terminally ill to feel the same.
null
ungreased0675
My friend, you are on a website called Hacker News. This isn’t Normie News where we stick with the most common solution for things.
mllev
I guess hope can be false now.
selenography
Sure, if by "now" you mean "at least since Geoffrey Chaucer's time":
> And thys vyce cometh of false hope that he thynketh he thall lyue longe, but that hope fayleth ful ofte.
[1] https://www.google.com/books/edition/The_Workes_of_Geffray_C... [2] https://books.google.com/ngrams/graph?content=false+hope&yea...
Or, come to that, "at least since Cicero's time":
> ...cui legi cum vestra dignitas vehementer adversetur, istius spes falsa et insignis impudentia maxime suffragatur.
[3] https://anastrophe.uchicago.edu/cgi-bin/perseus/citequery3.p...
_DeadFred_
If I let playing the lottery change how I interact with the world/prevent me from dealing with my situation, because I hope I will win, that 'hope' is a negative impact on my life.
If I encourage my friend who is down on their luck to buy lottery tickets so they can have hope, am I helping them, am I being kind?
JumpCrisscross
> guess hope can be false now
"Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life
...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1].
d--b
Errr. So your point is I should be reassuring my friend, by telling him he’s getting fantastic healthcare.
I don’t get it. My friend doesn’t need reassurance. He doesn’t need to take comfort in the fact that France has good healthcare. He’s going to die and he knows it.
I am here just because I want to tell him: if you want to try something crazy, and it may not work at all, there’s this. If you prefer not to, that’s fine too.
_DeadFred_
Yes, my point is you should be putting your friend with a terminal condition at ease so that they can skip wasting any energy on regretting their healthcare situation thinking they would have lived 'if only...', and you should help them enjoy/process/maximize their remaining time.
I get what you want and why you are here, I do. Been there done that for friends and family. I lost my mom, don't think I didn't try to find every treatment, and for me she did them all no matter the pain/loss in quality of life it inflicted on her. In the end watching Joel Olsteen gave my hippie/anti christian progressive mom comfort so guess what, anti-organized religion me sat and watched Joel friggen Olsteen with her as she accepted and processed her situation, while inside I screamed 'noooooooo, we can't accept this! NOOOOOOOOOOOOO! Mom no, I can't lose you, and our final time can't be spent watching Joel friggen Olsteen!'. And on that final day, when she was suffering in worse pain than I can Imagine, I put on a brave face and told here it was OK mom, she can go now, she can have peace now, while inside I screamed 'you can not goooo! The world will end if you go!!!! You can't leave me, ever'.
Do you really think anyone is saying 'you can go now' inside when they tell someone it's OK to go? Do you really think everyone thinks their local medical care is the absolutely best in the world when they say 'man, good thing you got Doctor X, good thing we have this facility'?
hyperliner
[dead]
avgDev
I think it is ok to seek some alternatives or "hacks" for some hard to diagnose chronic stuff like fatigue, as there are so many things that can cause this.
However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil.
HackerNews is also filled with people who think they know better than experts because they can write code.
ryandrake
Reminds me of the joke: What do you call alternative medicine that works? Medicine.
If any of the wild things posted in threads like these actually worked, those things just be considered standard care.
avgDev
For sure, I have an example from my life even.
I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments.
Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.
7e
It's false hope, swallowed hook line and sinker.
d--b
Sure this is the right place for a good word
mllev
Person with cancer: I hope this new treatment works for me
You: FALSE!
d--b
This fucking pisses me off.
The current treatments ARE essential oils, and EVERY FUCKING ONE is recommending my friend he goes through chemo, radiation therapy and risky surgery, all of which are proved to be extremely debilitating, in the sake of following the standard protocol, with a potential reward of living some weeks more.
Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects. Yet, no one will inject a Zika virus sample to a patient, because it is not protocol.
I have no idea why the random pub med articles aren’t reproduced. But what I know, is that maybe one of them is onto something. I was mostly wondering if anyone in the community had found it.
Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
Sure it’s a moonshot. Why not try a moonshot? It’s stupid not to.
The ETH Zurich article I posted said something like “don’t try this at home, self medicating would be incalculable risk”, but is that a joke? Not trying anything leads to certain death.
UniverseHacker
> Why not try a moonshot? It’s stupid not to.
I'm a researcher in the biosciences, and know how unlikely it is that these one-off and in-vitro findings are likely to work but I would 100% scour the literature and try experimental treatments on myself if I were in this situation. You've made a good start in looking at some interesting ideas, and there are a few more in the replies. At the very least, it might provide some information that would help someone else. I'm not sure how one would actually go about getting infected with zika.
I'd also try to come to terms with the fact that these are very unlikely to work, and focus on getting my life in order, according to my values and goals. I'd also re-read Epictetus.
However, I will also provide what you are asking for here: If you want an anti-authoritarian biohacker with radical but not stupid ideas - especially about treating cancer look at the late Ray Peat's blog. I've published well received academic papers inspired by his work. But avoid his online followers, they are idiots. Much of his specific ideas and suggestions are basically outdated, but his general attitude towards understanding biology and solving problems on your own is excellent.
However, if it were not me, I would not suggest anything unless they very seriously asked me to do so. I am very much into weird medical ideas and theories, have a biomedical PhD, and yet do not try to play doctor to my friends and family. Sometimes I will offer to share ideas if they want to hear them, but leave it at that.
trehalose
I'm not sure I'd call Ray Peat's ideas "radical but not stupid". He claimed that eating a tablespoon of honey could cure almost any fatal injury.
gwerbret
I sympathize with your situation and frustration. And yes, temozolomide and bevacizumab and whatever else they're giving your friend won't buy much time. Everyone knows that.
Part of the problem unfortunately is that glioblastoma, like many highly-aggressive cancers, is not a single disease but many. The cells mutate frequently, and each group of mutant cells (call them a "clone") is in business for itself to survive anything you throw at it. So something like your Vika virus idea, for instance, might have a 1 in a million chance of killing 99% of the cells, but the remaining 1% will be completely resistant and go on about their business. (Meanwhile, the virus is orders of magnitude more likely to cause more harm than good.)
Since you've known so many people who've had GBM, there may be value in investing in research that might help someone in the future. There are two broad moonshot approaches. First, the immune system is the central axis of cancer. Every cancer that grows and spreads is an example of the immune system failing to do its job (usually because the tumor has shut it down). If we can better understand how this happens, we can make pan-cancer drugs. They sort of already exist: one group is called immune checkpoint inhibitors. They basically unmask the tumor, allowing the immune system to identify it and take care of business. But they're only part of the solution, we obviously need more.
Another approach is further out there, and involves development of nanotechnology. Bacteria-sized machines small enough to get into cells could ideally be tailored to do pretty much whatever we want. This is a bit more of a long shot, but this is the sort of thing that would help solve the endless game of whack-a-mole that is cancer medicine today.
dekhn
Your understanding how HIV/AIDS was treated successfully is completely wrong. HIV/AIDS was treated through an absolutely enormous amount of research and a careful negotiation between the scientfic community and the diseased community.
DriftRegion
> Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
What? how did people take things into their own hands?
alecst
I'm really sorry to hear that. Since you're asking for moonshots and weird things to try, here's something they can ask their doctor about:
> Case reports involving glioblastoma patients using water-only fasting regimens in conjunction with other forms of cancer treatment have reported favorable outcomes with respect to tumor growth https://pmc.ncbi.nlm.nih.gov/articles/PMC2874558/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5884883/
fcanela
I have a relative with glioblastoma who could see his granddaughter born if he extends his life a while. Thanks a lot for sharing!
alecst
You're welcome. I read a lot about fasting and I have a lot of experience with it. It's helped me, personally, heal many things (but not all of them -- it's good to have low expectations.) In any case, it's a mind-expanding experience to go without food for a while, regardless of the outcome.
serguzest
Please Google Thomas Seyfried and William Makis. The latter is controversial—if he’s not completely fraudulent and making things up, he might be onto something. He’s sharing emails from numerous cancer patients who claim to have healed using these two particular molecules.
GIFtheory
Exercise can supposedly help outcomes for some types of cancer—-I wonder whether the mechanism is similar to that of fasting. The supposed mechanism AIUI is that exercise makes less glucose available to the tumor. Podcast with more info here: https://overcast.fm/+6j6rLbfGM
znpy
There was an episode from “diary of a ceo” (don’t let the title fool you) where a scientist was making similar remarks:
I wouldn’t usually post these kind of things, but since OP is asking for moonshots i’ll take a chance.
Best of luck to your friend!
ballooney
You still shouldn’t post that kind of thing. Especially not that fraudulent bullshitter host.
d--b
Thanks
thomasfromcdnjs
I'm one of those stubborn types that will refuse all medical treatments, lots of fasting is my current go to strategy if some tumor gets out of control.
anonzzzies
steve jobs and many others tried things like that. if it makes you feel good then sure, but that alone will kill you faster when a tumor(s) gets out of control.
ibash
You should ask them if they want you playing doctor.
I have a chronic disease, not fatal, and totally manageable. But the most annoying thing is when someone finds out and suddenly pretends to be the expert.
Of course my doctors and I investigating it for years were completely wrong! I should’ve ate more apricots!
Please just check with them if they want their limited time spent like that.
ionwake
dont get why that upsets you. I have had a chronic disease my whole life and one of the people who offered help completely saved my life.
If anyone else told me to eat apricots Id be grateful for their time and attention.
I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
Sorry I just have rarely seen my friends or family offer any advice.
- Back to OP, Ive always remembered Paul Stamets recommending the stamets-7 mushroom blend with research papers talking about recession. no idea if it works.
konart
>dont get why that upsets you.
Because this often sounds like people think you haven't tried (almost) everything yet and of course they might have a solution.
I think your and parent commenter's situation and reaction are polar though. One was in the situation where they receive an unwelcome advice all too often, the other one would like more attention but never got one.
Notice than you are prepared to do something you are not really iterested in and possibly don't even need - only to give some 3rd party a satisfaction as a "thank you" for their attention.
loa_in_
How else could they get to know that if the whole topic is taboo?
RIMR
The problem is that when you are trying to accept your fate and come to peace with it, and everyone else around you is trying to give you false hope. It's hard to break free from the constant futile wishful thinking if everyone around you is doing it for you.
Sometimes you should just let people work with their doctors and come to peace with their situation.
If I was dying of cancer, and someone told me to eat apricots, I might shove the apricots down their meddling throat.
scotty79
It can be bit annoying because people people think "can't hurt to try" but there's thousand unfounded things to try, little time, no way to pick and some of them could hurt. There's no harm in listening to ideas, being expected to implement them is another thing.
threeseed
a) Nobody here is talking about unfounded things nor demanding anyone do anything.
b) There are not thousands of things to try. In fact in most cases there will be no options since you will need to be in a clinical trial, asking a Doctor to try something unproven and unethical or need substantial resources.
shakna
> I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
You might for the first. Maybe the second. Probably not for the fifth. Certainly not the tenth. You may be tempted to hit the fiftieth.
If everyone around you feels the need to help, and provides the same insights, because they're not experts, then they're providing you the same repeated insights that you encountered at the beginning of your journey. A journey you may already be decades into, and having the same information shoved down your throat, day after day after day.
There is a reason that "Have you tried yoga?" is a meme in the chronic illness groups. Yes, it may provide some limited help, like most exercise. But 3652 days of hearing about it, later? Your patience might not have lasted.
OPisntauthority
Not everyone wants to be reminded of their situation or turn major aspects of their life into a struggle.
serf
first: the person who doesn't want to be reminded is probably not the person that is approaching you and actively telling you that they are approaching the end of their life.
second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.
cwbrandsma
Same boat with having a chronic illness, not fatal, but no cure either. It gets tiring wading thru all the snake oil salesmen selling false hope. And it isn’t them directly, because my older family members will hear about it with “have you tried…”
kens
> I should’ve ate more apricots!
Did you mention apricots deliberately? Apricot pits were a huge, huge alternative medicine in the 1970s under the name Laetrile. Proponents said that Laetrile would cure cancer and was being covered up. The FDA banned it, saying that it accomplished nothing other than potential cyanide poisoning. Meanwhile, tens of thousands of patients a year went to Laetrile clinics in Mexico and spent tons of money on it. Laetrile was smuggled into the US from Mexico, second only to marijuana. Enthusiasm dwindled after studies failed to find a benefit. (Just some hopefully interesting history about apricots.)
A news article from the time: https://timesmachine.nytimes.com/timesmachine/1977/11/27/939...
serguzest
I have a friend who is an MD, and he recently asked me what I’ve been doing to manage my seborrheic dermatitis. Since dermatologists have no cure for it, we often have to resort to anecdotal treatments. Moreover, big pharma doesn’t invest in studies for treatments they can’t patent. Blind trust in medical professionals isn’t necessarily wise. Anecdotal solutions still hold significant value, in my opinion
cj
My best friend died of brain cancer.
Although not from the cancer itself. He died of an opioid overdose. He was prescribed pain killers for cancer-related pain, and got hooked. His doctors stopped prescribing, so he found it elsewhere, and got a bad batch with fentanyl. (He was a VC living in SF, well to do, he had all the treatment money could buy, but cancer ended up not being what killed him)
I know this isn’t what you’re looking for, but be sure to not ignore other parts of his health. Addiction and other disorders are common among people with terminal or not-so-great prognosis.
The most you can do is to be a great friend.
stickfigure
> Addiction and other disorders are common among people with terminal or not-so-great prognosis
It's horrifying that we don't just give them what they want. Who are we to judge?
cdrini
I think that's a kind sentiment, but the counter arguments would be (1) they could very likely overdose and die, and (2) an addiction changes who you are, so it's not that "they" want it, it's the addiction that wants it. Your friend is the "they" before the addiction, and likely hates themselves after every time they fall off the wagon. To be clear we don't know the exact details, so we're speculating ; I could imagine some universe where it might make sense to let them, but in most cases I think what the real "they" would want is help breaking the addiction so they can spend their time doing the things that actually matter to them and give their life meaning.
stickfigure
That sounds incredibly patronizing. For some people, just being comfortable and happy for the remainder of their brief miserable life is meaning enough.
cdrini
This video popped up on my YouTube recently and illustrates this idea well: https://youtu.be/JyzJrkF21MM
avgDev
Taking opiates from a terminal patient should be against the medical oath.
nick__m
Stopping opioid because a cancer patient is addicted is incredibly cruel! sorry for your lost.
cdrini
Responded to one of your sibling comments with more thoughts, but it could very well be what the patient themselves wanted -- help with breaking the addiction so they could instead spend their time doing things they care about.
egorfine
> He died of an opioid overdose
I'd say this is quite far away from the top entries in the list of worst ways to go.
JumpCrisscross
> this is quite far away from the top entries in the list of worst ways to go
Genuine question: is it? I would have thought it's quite peaceful. Particularly since pentobarbital overdose is how we put down our pets [1]. (Not an opiate, but also renders you unconscious.)
[1] https://en.wikipedia.org/wiki/Pentobarbital#Euthanasia_and_a...
egorfine
It doesn't even matter whether this is painful for the body or not because you (as in your consciousness, your mind) are not there to witness the process and experience any physical feelings.
paulpauper
Addiction and other disorders are common among people with terminal or not-so-great prognosis.
Or maybe his death was an outlier .pain meds are well tolerated by most people.
zblevins
I have heard some people having luck by switching to a ketogenic diet. Here’s a paper I could find on PubMed about this. Sorry to hear about your friend.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9504425/
Edit: I am not a doctor. My wife is a physician and I spoke to her before posting this.
jawilson2
This. It is very dependent on the type of cancer. There is a lot of research on this. For a little context, I was a pediatric neurology professor for a while, and have been on a low carb diet for a decade. Much of the department did low carb, as did much of the oncology dept. Many kids with epilepsy are put on keto as well with great effect. I did a deep dive into low carb research before starting and keeping with the diet, and found a lot about using it for cancer therapy. I'm not sure what has changed in the last 10 years, but the above abstract looks promising. With a GBM, they probably don't have much to lose. *This is not medical advice, I'm not an MD (I was a BME doing epilepsy research), have them check with their Dr.
droideqa
The keto diet was actually developed specifically to help people with epilepsy[0].
[0]: https://epilepsysociety.org.uk/about-epilepsy/treatment/keto...
Dansvidania
I wish I had something better to add, but I can add an anecdotal +1 to this.
A relative went keto pretty hard after a bad diagnosis and they are still going strong. As far as I understand it, cancer cells can only function on glucose.
layla5alive
Some types of cancer cells
Dansvidania
do you have a source for this? not arguing, just would like to read more
circlefavshape
In my life a relative (by marriage) went keto after a bowel cancer diagnosis, and died at age 45
olieidel
+1 on this. I did my thesis on Glioblastoma-related imaging stuff [1]. The state of the art at the time (~2016) was that, realistically, none of the current treatments were "great", unfortunately. In short, you have 1) surgery, 2) chemotherapy, 3) radiation. Those treatments did extend survival in studies, but the overall survival of Glioblastoma patients was (tragically) still very bad at 12-24 months, and none of those therapy options were a cure.
As a side note, I recommend the book "Being Mortal" from Atul Gawande. The TLDR here is that our healthcare systems tend to overtreat patients, especially those with cancer who actually have a rather bleak prognosis, because it's easier for a physician to simply order all treatments and tell the patient "all good here, good luck" instead of taking the time to sit down and have a (long) conversation about the bleak prognosis and which options are actually still worth it. By "worth it" I mean that there are trade-offs to each treatment option, and it takes some very careful weighing whether each one provides a net benefit for your friend's individual situation. E.g. surgery might extend survival by X months, but might also create, worst case, new disabilities. So now you're faced with the very difficult decision of whether to potentially live for a shorter time with less disabilities, or for a longer time with more. There's no perfect answer, but having this sort of discussion is a good step which many patients unfortunately never take. I think this is a failure in our healthcare systems and maybe in the education of physicians.
Now, if I personally had a Glioblastoma, on top of the standard of care (surgery probably makes sense etc.), I think the ketogenic diet would currently be my best shot. Yeah, sure.. it's mostly only case reports so essentially anecdotal evidence, but it does look promising.
Good luck for your friend!
[1] https://scholar.google.com/citations?user=tinu7tYAAAAJ&hl=en
d--b
Thanks a lot, I hadn't seen this. I'll read through.
mixmastamyk
While we're thinking about it, Vitamin D3 and K2-mk-7 are known to be helpful in that regard.
myphone8356
Not an expert or doctor disclaimer.
Sugar is the food cancer cells crave. Not a miracle cure but restricting sugars may help reduce the growth of the tumor.
hombre_fatal
I'm pretty sure that's an old myth that sugar preferentially feeds cancer cells and that you somehow starve them by reducing sugar intake. After all, the body maintains stable blood glucose levels regardless of how low your sugar intake is.
e.g. https://news.cancerresearchuk.org/2023/08/16/sugar-and-cance...
adamredwoods
If diet could stop cancer, we'd be done by now. I guarantee every cancer will mutate to overcome any change in diet you can throw at it.
stickfigure
All cancer treatments are probabilistic. There are no cures, just interventions that increase survival rates. There are no honest sentences that begin with "every cancer".
adamredwoods
There is no diet that will even intervene with cancer, unless the patient dies.
Cancer is the patient's own cell that has mutated to a point beyond apoptosis and adapted to be able to draw nutrients from cells around it. It started from just one cell. It has already evaded dietary fluctuations and adapted.
EDIT: the reason I'm a spaz about this is I feel too many people focus on diet as the focus of cancer. While it might be good for some prevention, it will not stop it, and I want people to focus on real treatments.
eaurouge
> Effect of fasting on cancer: A narrative review of scientific evidence
> Emerging evidence suggests that fasting could play a key role in cancer treatment by fostering conditions that limit cancer cells' adaptability, survival, and growth. Fasting could increase the effectiveness of cancer treatments and limit adverse events. Yet, we lack an integrated mechanistic model for how these two complicated systems interact, limiting our ability to understand, prevent, and treat cancer using fasting. Here, we review recent findings at the interface of oncology and fasting metabolism, with an emphasis on human clinical studies of intermittent fasting. We recommend combining prolonged periodic fasting with a standard conventional therapeutic approach to promote cancer-free survival, treatment efficacy and reduce side effects in cancer patients.
zmgsabst
Diet impacts survival rate, in conjunction with treatment. Please stop spreading misinformation.
adamredwoods
This paper you linked didn't solve anything. Please read it, and stop spreading misinformation:
>> However, patients may not tolerate such a CR diet for prolonged time. Therefore, as alternative, it has been proposed an intermittent fasting regimen, whose beneficial effects also appear promising though somehow controversial in preclinical settings. This will require further elucidation in controlled clinical trials.
Have you spoken to oncologists and cancer nutritionists? I have.
sirholmes
Look at MDAnderson in Houston.
https://www.mdanderson.org/cancerwise/glioblastoma-survivor-...
https://www.mdanderson.org/cancerwise/how-i-knew-i-had-a-bra...
Along with other success stories, they helped my sister with a particularly lethal form breast cancer in one of their clinical trials.
Also - If your friend is approved and needs a place to stay, let me know. Know a couple of people who help house people who are getting treatment here.
You’re an amazing friend and I hope your friend gets the care they need
jo6gwb
Google Richard Scolyer: Top doctor remains brain cancer-free after a year. A year after undergoing a world-first treatment for glioblastoma, Australian doctor Richard Scolyer remains cancer-free.
Check out Sonalsense - https://www.sonalasense.com/for-patients. Requires specialized machine not in US as of last year.
Dr Mitchell Berger out of UCSF is the GOAT.
klipt
Scolyer is in the relatively fortunate position of being a world class cancer researcher before getting cancer, so he had the resources of an entire oncology lab to give himself a speculative treatment.
femto
Best hope in this regard is to keep an eye out for a resulting clinical trial, unless you have access to a friendly cancer research lab that wants to replicate the experiment.
aCameronhuff
Here’s a summary of all of the current treatments and near future treatments for GBM/glioma: https://docs.google.com/file/d/1kTa3eamaL91Smjh9r_0CYv5OYFX4....
This is as complete a list as you’ll find, written in plain English, with citations for every part of it. Slightly out of date but there hasn’t been much that’s new and different since last year. Vorasidenib was approved recently in USA and it’s the most effective IDH inhibitor - worth reading more about.
The document is focussed on glioma but there’s a lot of GBM research. Unfortunately the short answer is that there is no cure and there is treatment that might be a cure under development. There are treatments that slow the course, and the patient’s doctors know all of them and they will recommend what’s best. This is an area of medicine that is hard for amateurs to learn about, and a neurooncologist has decades more training than their patients. The reality is this is a horrible disease that currently has no cure - and the treatments that work are all complex medicines prescribed by specialists.
mahkeiro
I read about this guy last year, using melanoma approach (he is a melanoma specialist) for his GBM: https://www.theguardian.com/books/2024/nov/03/brainstorm-ric... Of course n=1, but I find it interesting when there is this cross field way of thinking.
aCameronhuff
He’s gotten a lot of press attention and it’s great, but it’s not something new. The researchers who do GBM work are always looking at developments in the parallel tracks of other cancers. It’s not really the case that they haven’t looked at melanoma work. That’s sort of a news spin on the nature of this work. There’s always cross-pollination because the genetic underpinnings of cancers are almost always related. For example, IDH inhibitors (the most recent advancements for glioma patients) are relevant for several kinds of cancer, not just gliomas.
IAmGraydon
The occurrence of GBM is about 3 out of every 100,000 people. If you happen to know 4, is there some commonality? Do you all work together in the same industry? Do they all live in the same town?
deegles
My aunt is in her 70s and has 5 friends currently with cancer. My belief is that it's downstream effects from Covid wrecking people's immune systems and their ability to naturally fight cancer. Time will tell.
dekhn
Bayes and Occam would suggest otherwise. If you're in your 70s in the US it's likely many people you know have cancer (unrelated to COVID). Especially now, given that detection is better than ever and more people are surviving longer with cancer.
MichaelZuo
Even more so, Probably 100% of the population over 70 has cancer in the sense of a clump of abnormal cell divison, just that for a lot of them it’s so slow growing or in a benign tumor that it doesn’t get discovered or treated.
Loughla
Not even thinking about environmental factors then?
admissionsguy
Unlikely to be COVID. The mRNA vaccine on the other hand...
armchairdweller
They are never gonna realize, the spell is too strong, particularly here
If anybody with an open mind reads this: plasmid DNA contamination / insertional mutagenesis (use a source that hasn't been altered by the pharma industry for cover up)
throwawayffffas
I was about to say this knowing 4 people with GBM means there is something in your environment causing this.
I am sorry about your friends.
d--b
No it's so weird, no connection at all between any of them.
lithocarpus
All four have the same kind of brain cancer? Or just have some kind of cancer?
d--b
Yeah all GBM
georgeburdell
Military? Glioblastoma is correlated to military service in the First Gulf War
EVa5I7bHFq9mnYK
Radar microwave radiation?
d--b
Nope
glitchc
Sorry friend, there no hacks from brain cancer. Mortality rate at Stage 4 is 100%. You're better off spending as much time as you can with them.
aCameronhuff
Unfortunately this is true, and there’s no near-term treatment that might change this outcome. There’s some treatments for slowing it down but there’s no proof of anyone being cured by any experimental method. There’s great progress being made and thousands of people working on paths to a cure but we’re still early days for some diseases.
frisco
Personally knowing four people with GBM and not being an oncologist is exceptional and worrying. That feels like it should be raised to… someone. It is very possible something bad is happening and a commonality needs to be tracked down urgently.
d--b
It is indeed very strange, none of these people lived in the same place or got diagnosed at the same time (some 20 years ago). Most are fairly remote to me though... Like : a good friend's mom, or my wife's cousin's husband, etc.
selcuka
I knew two people (one adult, one child) who lived in the same building and got diagnosed with leukemia (~14 per 100,000) shortly after each other, maybe within a few weeks.
It's anecdotal, of course, but I've always thought that there could have been a connection.
hinkley
It could be birthday paradox, but it could potentially be enough to get someone to come check for contaminants.
Looks like benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia. But some of those can turn up near housing.
selcuka
> benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia.
That rings a bell. I remember that someone mentioned a recent repainting of the building. The incident happened at least a decade ago, so I can't remember all details.
A friend recently got diagnosed with stage 4 GBM. It's the 4th person I know who has it, and it's getting old, so I want to help, bio-hacking style.
I stumbled upon these guys who built a helmet that rotates strong magnets to create oscillating magnetic fields in the brain. They claim the oscillating magnetic fields cause cancer cell death through mechanisms I don't understand at all.
https://www.nature.com/articles/s41598-023-46758-w
Did anyone try to build one of these?
-- Other avenues:
1. taking vortioxetine
https://ethz.ch/en/news-and-events/eth-news/news/2024/09/ant...
2. getting infected with the zika virus (probably the best thing to do IMO)
https://pubmed.ncbi.nlm.nih.gov/37324152/
https://pubmed.ncbi.nlm.nih.gov/33002018/